Advice for new DBS-patients

I was diagnosed having Parkinson’s in 2010, and started taking medicines immediately.

At first they worked well, but years went by and I needed more and more levodopa and carbidopa, better known under the brand name Sinemet. My neurologist, a man who knows his profession well, advised me to have a DBS operation. My physical and mental condition and my age were ideal, he said, and recently it was possible to have the operation anesthetized. So I went for that option. It was January, 2019.

Advice for considering DBS

Here is my first advice: if possible, have your DBS operation anesthetized. It leaves you more relaxed. Knowing the operation takes around five hours, it is less stressful not to witness it.

At first, I was overjoyed with the results. I could do whatever I wanted. My intake of Sinemet was down from 3200 mg to 600 mg daily.
Mind you: These results are not always the outcome. My wife, who also has Parkinson’s, has been operated upon and has no positive results from the operation whatsoever. Which is a great disappointment to both of us.

My second advice: don’t think your Parkinson’s is cured after having the operation. The main result is that the disease has been put back for a certain period of time. How long this period is going to be is uncertain. In my case I think it’s two to two and a half years. But now other symptoms are coming to the surface. I’m having serious trouble with my balance. So much so that a walker is not sufficient enough. My physiotherapist is doing her utmost, but it’s getting worse. A scooter is the only option left.

My third advice: find out to what amount of medicine your body reacts the best. Remember: it’s not going to be like before Mr.P. came into your life. But some people react better when medicine is taken regularly, eg. once an hour, while others can rely on their feelings when to take medicine. The latter sets in after a number of years.

Anyway, I hope to have given you a bit of hope and advice

Hugo P. van der Brugge
Zaandam, Netherlands